Lost

I was afraid he lost it.

And only recently, did I admit I thought it was my fault.

When COVID first hit, we faced some of the hardest days with autism. Mainly, I’ve determined, due to the lack of sleep, and the heightened state of anxiety we all faced.

In the worst run of it- out of 33 days, 29 of them I spent up for hours during the middle of the night with Luca. 

#Sleeplessnightswithautism, I deemed them… documenting them on my social media feeds, trying to explain what they looked like, and although the kind suggestions of “just let him work it out”, or “leave him in bed, he’ll be fine” and “don’t let him have his iPad” continued to come our way, I needed people to understand what our sweet boy was going through.

Seeing is believing, and they needed to see a STIMM in action… the way his small swift feet paced without hesitation around our darkened living room… his tiny fingers working through the buckets of small animal figurines, squinting his eyes to the light only provided by the Disneynature movie playing in the background…

I needed to show the way he simply could not settle… not due to a screen of an iPad, but due to the internal reel that raced through his mind, matching the drum to his rapid heart beat…

I needed to show his love of the lines and the attention to detail that when his mind was working in such magical ways where he would create these beautiful landscapes playing out in front of us. 

I was afraid, for a minute, when his lines stopped… that it was my fault.

Because when I couldn’t take the lack of sleep any longer, I worked with his doctor to put him on a medicine that would help him slow that reel at night… calm his heart beat… a medicine that I was afraid may have stopped his love of the lines completely... as he stopped lining up his figurines, and he stopped creating those landscapes of magic and wonder, once the medicine regulated his days.

My goal with the medication had never been to stop his stimming. I need to make that clear. There are mixed views on if you should allow stimming, and despite any controversy this may imply… Luca’s stimms of needing to create in that world were what I considered to be his magic - one that I felt privileged to bear witness of. 

I adored that he had this creativity stirring inside him that simply had to be shared with the world. 

I admired when he could show with such conviction that his artistry demanded the space and ability to be created… 

Like a painter who spends hours on a tortuous one nighter in a dark studio in front of a blank canvas… 

Or a songwriter who carries a small notebook, constantly humming and drumming a beat, allowing the words to swirl in their heads until they make it onto the page… 

The way a composer can get lost behind the keys of a baby grand, allowing every feeling to escape through their fingers as they move along the keys…  

It was magical… and by no means something I had hoped would end.

As I was making our holiday video though, Luca sat on my lap at its’ completion so I could show him the finished product. (If you haven’t seen it, selfish plug- give it a watch! I was really proud of how it came out.)

The moment that we got to his section, his eyes lit up. He watched as he made the lines on the screen, and screamed “Penguins!” when we reached the image of he and his friends at the aquarium. It was almost as if he had forgotten what it felt to be inspired.

He lept from my lap, worked his way to his playroom, and the magic began. 

The lines returned.

My heart ached as I realized how much I had missed it. Watching him in his happy place, creating without boundary, alive in this other world. 

I savored it. Unsure if this was merely a moment of inspiration that may not continue.

As the days went on, it was like his lines had never left.

Tonight, when I suggested The Lion King as he requested to watch a movie before bedtime, he paused to consider it. 

After a moment, he agreed, and then searched the playroom to grab his many buckets of figurines.

Those powerful tones of the opening scene played through the speakers, and I watched him take the small antelopes out, and start to line them up, while humming with the music. 

After the antelopes, he reached for the elephants, as the screen displayed the scene where all the animals make their way to meet the new baby prince, Simba. 

He lined up his butterflies, and his cheetahs… his buffalos, and his hyenas (or what he’s deemed to be hyenas, because frankly- they don’t make hyena figurines), all in front of the shelf on which he placed his monkey and his lion.

He continued to create for an hour into the film. 

It was beautiful.

Our boy had not lost his magic. 

Our boys’ magic still had a place to be fostered and celebrated... 

We just needed to wait patiently and remind him how special we thought it was. 

To those parenting, autism or not, remember that each child is magical. Take the time to witness it, celebrate it, and let them know how important you think it is… as it is uniquely theirs. And you never know when they may grow out of wanting to be part of that magic. 

To anyone who feels like they too may have lost part of their identity lately… maybe Luca’s lines can remind you how important it can be to always remember who you were, in order to discover who you can still become.

XO

Improv of Autism

Improv: of, relating to, or being improvisation or improvising : to make, invent, or arrange offhand.

I can remember Freshman year in college, standing in the Black Box theatre, as the exercise of “Improv” was explained.

There are no rules, our professor said, except to accept what you are given and not say “no”. If you were to say “no”, the exercise simply would not work, and what could be a beautiful practice in experimenting, learning, and believing would be over.

We were unleashed on the stage, at the whim of our fellow participants, encouraged to let loose, let go of any caged restrictions of being polite or proper we brought with us when we entered, and told to trust the players, giving them our everything while in the arena.

Lately… I feel like this is simply the only way to explain what “Parenting Autism” Is.

(C)Becky Abrams Photography 2020

Parenting Autism is buying screen protectors for televisions, knowing that at any given moment, something could be projected at your tv, and saying “No, we don’t throw things at the TV” means game over, with shattered cracks and black fuzzy projection is in your future.

Parenting Autism is the inability to relax at a birthday party or group gathering, because any simple thing could set your child off, and in the split second moment of fight of flight response, you have to be able to deflect both or either.

Parenting Autism is accepting that if you are in a gathering of any kind, where your child tells you it’s time to go, you pack up your troops and belongings and hit the road, despite if the journey there took longer than the time you spent in that place.

Parenting Autism is understanding that if your son sprints down your long driveway like an African cheetah who hasn’t eaten in a week but sees a deer at the end where the cars are rushing by, you can not expect him to listen to “freeze”, “stop” or even “come back please”, and you have to accept that he is going to run to the end of the driveway unless you prevent him from doing so.

Parenting Autism is watching “boys be boys” turn into life long scars when typical wrestling provides permanent damage and the folks in the ER know you by your first name, because “we don’t hurt/kick/punch/pull hair/etc.” simply does not register amongst the focused rage of revenge.

Parenting Autism is a melting heart when those same boys look to each other in moments of tenderness, and despite that social interaction, physical touch, and eye contact can be atypical, practice all three, followed by the words of “I love you” before an unexpected embrace.

Parenting Autism is understanding cant’ vs won’t, and not holding it against them, or yourself.

Parenting Autism is tears… lots of tears, but both those of sadness and equally as many of joy when you let them fall.

Parenting Autism is strain on a marriage, the kind that can either break or make you, depending on if it tears you apart or brings you together, and the kind that can make you believe in the power of parentship: the strength of a team.

Parenting Autism is sleepless nights… where the brain of your child cannot stop, and the imagination is wild as the rest of the world is at peace.

Parenting Autism is in the love of the lines, remembering to believe in the smallest of details and differences that makes each piece of line an important factor in the greater picture.

(C) Becky Abrams Photography 2020

Parenting Autism is accepting that your child plans to eat the same meal every day, no matter how strange or lacking in vegetables it may be, because at least it means their belly is full.

Parenting Autism is high-fives in the kitchen with cheers when your child eats a new food, and with a fork instead of his fingers no less.

Parenting Autism seeing the importance of a specific print on a specific T-shirt as the difference between a good day and a bad day at school, because the love of the character in that print can make your boy brave in the moments when the anxiety can feel paralyzing.

Parenting Autism is celebrating when your child gets notes sent home from school, that they had a “great” day, were present, worked hard, and served as the classes’ special helper.

Parenting Autism is teaching your child that all feelings are important, and meant to be felt - accepting and acknowledging any and all of those feelings when they surface unexpectedly.

Parenting Autism is sacrifice for all members of the family, but the greatest gift of learning what hard work and commitment to each other can truly mean.

Parenting Autism is witnessing magic in the every day moments, the kind that creates beauty that cannot be imagined or believed if not experienced first hand.

Parenting Autism is blind faith in that every moment of your life before the one you are in has prepared you trust your instincts and move blindly forward without expectation or opposition.

Parenting Autism is getting on board to not saying “no”, but to being present with your child for all of it: the hard moments, and the magical, twenty-four hours a day, five hundred and thirty six days a year.

(c) Becky Abrams Photography 2020

When we started to follow the rules of improv, in terms of how we parent autism, we found more joy, more excitement, and more freedom.

We let go of the society presented rules on how to parent, and began to listen to what our children needed from us, accepting that all players on the stage had equal opportunity to dictate where the scene could lead.

We stopped taking it out on each other, like some how parenting autism was anyone’s fault, vs. just the magical arena we walked into, choosing to partner, hand-in-hand, as a unit in the skit, vs. individuals thrown in separately.

We began to focus on the wonder, and the reward in all of the work, appreciating the unknown twists and turns of our story.

We participated in the art of it, and watched in awe on how our faith, attention, trust, and acknowledgement gave our children the courage and confidence to be who they were made to be, each taking opportunities to shape our narrative.

We are only a few years into this improv journey with autism, and fewer as the present improv troupe we were made to be, but we look forward to the journey ahead as a team.

Yes, “Parenting Autism” has narrowed our audience, as our performance is not one everyone buys a ticket to, but those in the stands cheer louder than a room full of those who were barely watching to begin with.

And yes, “Parenting Autism” is a marathon, not a one-night performance… but it’s fresh, exciting, and still yet to be decided, promising cliff hangers at every turn.

So, if you’re in the arena with us, send us a wave, a wink, a hello… or even an introduction to whatever scene you want us to be a part of. We’ve learned the rush and thrill of the trust fall, and once you’ve experienced the pure organic magic that comes from the unknown, it’s truly hard to ever say “no” again. XO

The Special When

When we found out we were pregnant, we started to imagine their futures. We started to think about what could be for them one day. 

When we picked out their names we looked to reflect a path we hoped would be possible- providing them strong, dependable, serious and relatable names.

When we pictured what their paths may look like, we thought about this close bond that they’d have as twins. They’d grow up always having each other… a partner in crime… a shoulder to lean on… someone who would always have their back. 

When we navigated those sleepless nights of newborn twins, juggling breastfeeding and pumping, diaper changes and tight swaddles, we told ourselves… this too shall pass.

When they rolled over for the first time, we thought, “A milestone! we hit a milestone!” and anticipated so many more milestones to come.

When we talked about their futures, we gushed over the endless potential sports they would play, the potential jobs they would have, whether or not they’d want to go to college or just jump into learning about the family business… We promised each other we’d support whatever dreams they might have… 

When the boys were diagnosed with autism at 18 months, we were in denial. We thought their speech was delayed because they were twins without older siblings and had never been in daycare. When doctors said they weren’t sure Luca would ever talk, we responded with determined disbelief that the experts had no idea what they were talking about. 

When the boys hit age two, and we started to really learn about what autism would mean for our family, we started to understand how severely unknown our road ahead was, and how all those assumptions of hopes and dreams we had for our boys shifted…

When the sleepless nights returned, on top of bringing another newborn in our house, we started to wonder if we’d ever sleep again.

But then, something clicked… 

When we learned about the magic of autism, we dropped the self-pity and the potential doom autism could mean for our children, and focused on the incredible road that had yet to be paved would look like.

When they started to make significant progress in school, finding words we weren’t sure we’d ever hear out of their mouths, we leaned in hard to asking for help, being open to whatever autism may bring and researched wherever we could to learn about how to be the parents they needed.

When Jack went to his first birthday party of a classmate, played with friends, and even sat down to sing before cake, we began to see glimpses of that life we thought may be ahead for our boys, both despite autism, but also because of it.

When COVID hit, and they took away the routine and resources the twins received from their school, we thought it might be temporary, but stayed open-minded to our ability to show up for them.

When the weeks passed, and the sleepless nights outnumbered the ones with sleep in them, our tired bodies began juggling the chaos and anxiety the pandemic left on our family. We began to have a hard time keeping perspective that the regression happening before our eyes with the twins wouldn’t be permanent. 

When I reached out to their academic team, and then the administration above them, as well as the Super Intendant begging to know what plan lay ahead this summer, when only the students who were in serious need like our twins would be in the school district, limiting exposure for the virus with plenty of resources to get our twins back on track, we found very little perspective left to focus on, as their optimistic promises to put a plan in place continued to fall flat.

When we learned, just last week, that the summer school their medical diagnosis, and assessments of their incredible academic team assigned them, would be limited to hourly increments daily, we started to feel defeated. 

When we look at the magic in their autism now, we see it being buried by their anxiety, need for routine, longing for their peers, and regression that has shown to potentially have permanent damage.

When we look ahead to their future, we worry that the lack of what we can provide for them right now, during however long this pandemic keeps them out of school, will seriously effect who they could be, the life they could live, and the choices they will have when the time comes - forget what sports they will play, if they will want to go to college, or what jobs they may want.

The special “when” for children with special needs is being ignored with the severity of everything going on in the country right now, and although it may fall low on the priority list for so many of the talented decision makers out there who could do something, it remains at the top of our priority list as their parents.

So I ask you, WHEN will the medical diagnosis that outlines what our children need be enough to get them back on track, so that their many special whens of the future can remain bright, full of hope and possibility.

When?

What do you need?

“What do you need?”

The question is banging at the door I’ve closed in my mind as I lock myself away in my mental closet of a pity party, sitting on the cold dark floor, letting the tears continue to fall.

“What do you need?” It demands from me.

Like my four-year-olds, I sit in the time-out crying, ashamed, and unable to find the words. 

“I don’t know!” I want to shout back. “Don’t you think if I knew, I’d know how to ask for it? Or better yet, get it for myself? I’m fully capable.”

As I breathe, I can feel the weight in my chest and I whisper… “I need this pandemic to be over.”

The lack of response confirms what I already know, that it’s not over, not even close, and it may get far worse before it gets better.

“What do you need?” The ask is softer this time, almost with more patience and understanding.

As the tears continue to fall, and I find a steadier breath, I try to think logically, of actual problems I’m trying to solve, not just the overwhelming feeling of weight… What are the little things that could help? 

The obvious come to mind: I need a break. I need sleep. I need to not answer to someone long enough to get myself from the 10 level of breaking, back down to a 2 or 3… that livable weight of reality that is easier to manage… When I’m at a 2 or a 3, if a twin pulls the other’s hair, or throws their cereal, a simple “whoops, we need gentle hands”, or “oh no, our cereal escaped our bowl” is my automatic response. When I’m at a 10, or a 12 like I feel like I am now, after another sleepless night with autism, my responses are not quite as kind. I’m a shadow of the parent I want to be, unrecognizably cold and shut down.

“So, what do you need?” it probes again.

How do I get to a 2 or a 3? How did I before COVID?

I had scheduled time… scheduled time that was mine… mine without interruption. Yes, there was a list of things to accomplish, but it was my choice in how they were done. 

It’s been months since my children went to school, or could be taken on adventure for a few hours so I could find quiet. Yes, I could leave, but where would I go?

“Last time… what do you need?” I know my time is running out. The violins are quieting. And reality is calling. Game time decision. Wash your face, girl, or let the world see you crumble.

The truth is… I’ve operated on less sleep. I have three children, and survived through breastfeeding twins. I’ve done this. My muscle memory is already trained and built. I think I’m just resentful that I thought this chapter of my life would be over by now, but instead, plays on repeat.

The truth is… I do have help. I have an incredible nanny who comes five days a week to help me navigate what lately feels like impossible moments of parenting autism during a pandemic to navigate. 

The truth is… I find breaks. We gave up working on the twins’ school weeks ago when the baby napped so I could take the break. And on the nights I really don’t sleep, those two hours are enough of a power nap to keep me on track.

“Think”, the voice smiles, “What do you need?”

And then it hits me.

I need to know it gets better.

I need to know we’re not alone in this, and that someone else has survived it.

I need to know that this type of chapter in raising littles with autism, or twin boys, or just three kids in general didn’t destroy someone else’s marriage, turn them into a cold, shut-down and mean monster of a person, or kept them from giving up completely.

I need to know that someone else’s special needs children who were up all night every night, (we’re going on 17 out of 22 nights right now) eventually slept through the night.

I need to know that kids will go back to school, and that the administration responsible for making that happen is aware of the repercussions this time is having on children who’s needs can’t be met with remote learning.

If I can find the lighthouse to focus on, I can weather the storm, and ride the waves. I can refocus, and celebrate the small wins that get us inches closer to that brighter destination. Not sure what it is yet, but anything is possible when you are willing to work for it, harder when necessary, never giving up.

I can feel my body rise, my hands find my cheeks to wipe the dampness, and my feet find the steps before them that walk me back to reality. 

This may not be over anytime soon: the extra strain that this pandemic has placed on so many of our realities. But if I can’t control the uncontrollable pandemic, I can choose to accept it, and only focus on what I can control. 

Dear reader… if you’ve been there, and gotten through it… share so that those of us who are in it, know we are not alone. And if you are in it with us, if any of this resonated, know we see you, and you are not alone. I have no idea how to fix it, but I promise to keep sharing in case it helps in any small way. 

Here’s to the lighthouses that make the waves of any storm feel possible to weather. May you find yours soon. XO

We Need Your Help

It still haunts me… the moment when our son ran into the house, tears streaming down his face, screaming as his scratched at his face furiously. It paralyzed me. I found a way to move toward him and try to comfort him, but it required following him for a matter of 10 minutes trying to calm him down.

I had watched the scene that sent him spiraling before he entered the house. The neighbors had a small fire going, about 15 to 20 feet from our yard. Although Luca stood in his “trees” which are really just large weeds that have grown to create this super cool path for the kids to play in, I thought he was a safe enough distance. The wind that day, proved me so very wrong. He watched the fire intently, trying to understand it, listening to it crackle. But then a large gust of wind took the smoke at him, and as he watched it like a rushing wave on the sea shore, it’s current taking him under with out warning, the smoke attacked his small body, with sensory over load. He couldn’t breath, and you could tell it stung his eyes, as he raced inside in a panic.

I wet a facecloth and held it over his tear stained face to try to stop the burning. I sang quietly and held him, rocking back and forth, hoping to calm him down. My wife was outside mowing the lawn, some where in the front where I couldn’t reach her. I wasn’t sure if he was allergic to the smoke or whatever was burning, or if he was simply scared and just couldn’t tell me.

That’s one of the hardest challenges we face, while Luca is still finding his words. He isn’t able to communicate what he needs as well as Jack, and it requires an elimination game of sorts. As I was parenting solo, I did the only thing I could think of to find answers that might help. I hopped on Facebook, posted about the situation, and hoped someone in my network could give me the words to explain how he was feeling when Luca couldn’t. There was instant support and things to consider, and it helped me triage faster than I ever expected.

Luca calmed down, his eyes relaxed and the puffiness and redness faded. He drank water and calmed his body on the couch. The tenseness in his muscles subsided, but the fear in his face remained. We kept a close eye on him all night, as he flinched at certain sounds, his eyes always searching the outside with caution, clearly traumatized.

I think, as parents, we’re always watching out for what could potentially harm them, trying to either shield as best we can, or hope we’ve given them the tools to face it head on, feeling prepared and capable. One of the most challenging parts of Autism with littles, when they have a sensory processing disorder, is that many of the things that could trigger them are foreign to us parents. The way they also process trauma, without the ability to talk through it, can seem equally foreign.

Luca stayed inside for three weeks. Our boy, who I imagined living in the mountains one day, due to his need to be in free open space as often as possible, had now trapped himself in the walls of his home, rushing to close any door when open, and crying in fear anytime you asked if he wanted to go outside. He would watch from the windows for any glimpse of smoke, and studying our neighbor has he continued to chop wood in the same place he had for months. About a week after the experience, he had some how found a video on youtube of a crackling fire, and had started to play it repeatedly for comfort. I kept expecting enough time to pass where he would eventually just go outside. But after three weeks, I was starting to get really worried.

I couldn’t understand it. I couldn’t find a way to help him. I asked his teachers for help, and had even reached out to a friend who is a psychiatrist for a referral to someone local who could help us.

We took a chance of bringing him to an open field with his siblings, as I had hoped to take their annual photo with the apple blossoms. Although we weren’t able to get any image to be compiled in photoshop of the three kids, we were able to get Luca to run outside again, after parking in two different areas before he was interested in exiting the car. His feet hit the ground, the sun shined on his face, and you could see his body breath a sigh of relief. It was such a win for us. We let him run until exhausted, packing the kids back in the car with renewed hope.

We had opened the pool the last week of April, but decided to turn the heater on earlier than planned, just to see if he would go through our backyard to get to it. I went swimming first, sending him a video through my wife who was inside with him. He giggled, but still refused to go outside. The second day, we decided to just bring him out to the pool. My wife carried him, reassuring him he was safe, until he was in the fenced in area with 30,000 gallons of heated delightful water. That boy’s smile lit up ear to ear, he stripped out of his clothes, asked for his puddle jumpers, and jumped in with glee. It’s been 5 days now, and there hasn’t been one he hasn’t spent hours swimming.

The thing is, unless he’s swimming, he still won’t go outside. I still can’t understand it. A swing set that was donated by another family, and stained by my wife’s team, is sitting in our yard. I’ve worked, with the help of an amazing friend, to clear the area, removing hundreds of large obnoxious weeds, and level the ground. I enlisted my sister to help me pick up all the large, heavy, half-assembled pieces from my wife’s shop when the stain was dry, to get them to our back yard. (We did have to ask for muscles outside our own to get two crazy pieces- thank you friends who lifted those!) I even have 50ft of turf rolled beside it, ready to be laid out. Today I’ll spread a few yards of loam to finally level it, roll the turf out and hope we can start building the swing set this afternoon.

What worries me is I don’t even know if that will be enough to get him to play outside again. And what if it isn’t?

As a parent, I feel like I ask myself what-if’s so often, I miss being present, or at least as present as I want to be. I’m so worried about the potential, that I forget to live in the what is. I feel like lately, I’m always worried about what I can’t control, and now that I’ve found myself in a situation with real trauma, it’s testing my ability to show up and be the parent our child needs.

I’m working every possible answer I can control, by giving him highly preferred tasks in the hopes he can rebuild his muscle memory of feeling safe outside. If that doesn’t work, we’ll most likely need professional help, which may not be the easiest thing to obtain during these crazy pandemic times. Anything to shape the fears he has of going outside to be saved as a single memory, not the current reality of what being outside really is.

If you have any ideas, please share. I don’t typically ask questions here, but as I’ve connected with so many incredible parents who have walked in these shoes, or are on the journey as we speak, as well as phenomenal teens and young adults with autism, I am hoping someone might have something I haven’t thought of. Some way to understand what may click for him and make him feel safe again. Because if this swing set doesn’t work, I’m not sure what to do next. Thanks in advance. XO

Next Mother’s Day

Next year, for Mother’s Day, my kids will sleep in, letting us sleep in, and when they finally get up, will play together nicely, working extra hard for calm hands and quiet voices because they know it’s their moms’ day. They will take baths after breakfast, and get dressed in whatever matching spring outfits I found at Jcrew weeks earlier, so that I can take their annual photo in the Apple Orchard where the blossoms that have just begun to bloom make the perfect setting of white gorgeousness.

Next year, for Mother’s Day, when we get back from taking photos, we will put tables out on the lawn, decorated with gorgeous colored clothes, and have flowers everywhere. The kids will have made cards and gifts, and will be on their very best behavior, playing in the yard while we set up for our guests.

Next year, for Mother’s Day, I want to host a big brunch outside in our back yard. I want my mom to drive up and feel spoiled for making the trip, because all her children and grand babies are there to be with her. And when she and my mother-in-law sit together, laughing and watching their grand babies shower them with love, they will get along like old friends, without any awkward conversations or family drama that holiday gatherings typically endure, because we will all just be grateful to be together.

Next year, for Mother’s Day, we will grill deliciously marinated meats, paired with roasted vegetables, and pasta salads. We will make fruity drinks, and have an array of desserts that inevitably the kids will want to eat before dinner, and because it’s a happy day of celebration- we will let them. We will eat too much, take a break, and then eat again, while still having more than enough tasty treats to send each of my siblings home with some for the next day.

Next year, for Mother’s Day, I will sit on my deck after an amazing meal, and watch those same siblings teach their niece and nephews how to play croquet, and bocce in the yard, making memories that will last the lifetime of my children until they are old enough, and fortunate enough, to have littles of their own to teach as well. 

Next year, for Mother’s Day, after the day is done, and the kids have been bathed and put to bed, I want to be able to give my wife a card that enclosed in it, tells her I have booked us a weekend away, where there are no children, and we can just be us for a night again.

This year, for Mother’s Day, it will feel like every other day lately, and that’s OK. We will laze in our pajamas during the morning, and only change into clothes (or a clean set of pajamas-don’t judge) when we are ready. As soon as Luca finally goes back to bed, since he has been up since 2am, I will too, and we will both rest our bodies for a couple of hours before officially starting the day.

This year, for Mother’s Day, we will get take-out from our favorite local breakfast place, and our pup, Piper, and I will enjoy the ten minutes of silence the car ride there takes us, while we wait for curbside pick-up, without anyone else in the car. It’s the only quiet we find since schools closed and the house no longer holds that solace for either of us.

This year, for Mother’s Day, my siblings and I will hop on a Zoom Call with my mother, to send her our love virtually, and safely, in this new normal, because she is of the at risk, who has done everything she possibly can to stay safe during this pandemic. As a breast cancer survivor, and someone who knows first hand what it means to fight for her life, she values every day since, and is taking every precaution to not have to fight again for a very long time.

This year, for Mother’s Day, the second virtual FaceTime call we will make will be to my father. First, to wish my step-mom a Happy Mother’s Day, but second, to see how he is doing on his the first one without his mom, who we lost to this pandemic less than a month ago.

This year, for Mother’s Day, as the day goes on, we will watch movies, and play indoors, because oddly enough, it snowed yesterday, and not conducive for yard games, or a photoshoot. We will most likely have to make up some of the school work we have missed this week, because sleepless nights with autism have made it hard to do much more than survive- working to keep all the kids happy, and safe from aggressive behaviors, let alone meet the homeschool requirements.

This year, for Mother’s Day, we will eat something from the crock pot or air fryer, or some sheet pan recipe, like we do on most days during quarantine when it’s not warm enough to grill. If we take a ride anywhere for take-out or drive-thru, we will make sure to bring happy Mother’s Day cards with the kids scribble drawings on them, to give to any mothers working on a day they should be home with their families, giving them with extra heartfelt thanks for everything they are doing to make sure our families can get what we need. Particularly because like many kids with autism, there are days our twins rely on nuggets and a happy meal to get any protein for full bellies. 

This year, for Mother’s Day, when my in-laws makes it over for dinner, I will have a glass of Chardonnay waiting for Granny, and two open arms for a hug, because as she is in our immediate circle, and someone we see every day helping with child care, she is someone we do not have to social distance from, and such an important lifeline I will be grateful to celebrate the important day with. We will makes sure to overly thank both her, and Pop-Pop, because without them during this pandemic, I am not sure we would be making it through with the grace and patience they make possible through their support.

This year, for Mother’s Day, when the kids are bathed and finally in bed, I will give my wife a hand-picked card, with as much love that I can write in it, telling her that whenever this is over, we will get time for us again. With the card will be boxes of her favorite movie candy, and an invitation for date night, where we rent a movie and put away our phones for the duration of it, pretending for two hours that no one needs us so we can just enjoy each other.

Mama, if you are like us, and preparing to spend this Mother’s Day in an unusual way, I hope my dreams of next year’s Mother’s Day help to inspire you to think of yours, in any of the moments when this years don’t feel like enough. Because there will be next year if we all do what we can to stay safe, continue to social distance, wash hands, and slow the curve.

And to all the incredible mamas who have to work this year, whether it be on the front lines in our hospitals and ERs, or as first-responders, and fire and police woman... to all the incredible mamas who are essential workers, and required to work in order to get that paycheck to feed their families, as delivery workers, mail service carriers, grocery store employees, pharmacy staff, gas station employees, and restaurant employees- thank you. THANK YOU from the bottom of our hearts for all that you do. Happy Mother’s Day to all the mamas out there- whether you birthed your children, or earned the title with every diaper change, life lesson taught, tear-stained cheek wiped, and open-armed hug- if you hold the title and meaning for someone today- may your day be filled with as much love as you have given to those who made you a mama. Until next year... XO

PS: I’d be remiss if I didn’t send a special Happy Mother’s Day to two additional women who shaped my life in ways that are instrumental to my ability to be a present, happy, and respectful mother. To Ma, up in heaven, who always gave me a home away from home, without question or expectation, I hope one day to have the house all my children’s friends want to be at every weekend. And to Anna, who continues to teach me about the mother I want to be, I’m so grateful to be able to ask the question: what would Anna do, and instinctually know the answer.

And to my love, my children’s Mama, and to the only reason I knew I could be a mom in the first place, because you promised to always be by my side… our parentship is the thing I will always be most proud of - despite that COVID19 is challenging it on a regular basis, forcing us to grow and be better every hour of every day for our children. Thank you for helping to leave a legacy where the best is still yet to come. Happy Mother’s Day. xo

Parentship

A few weeks back, on maybe day two of no school, life is over/*cough*/on pause, my wife had come home from work later than usual, after the first of many long days of adjustment for our new normal at home.

She was fried. As a small business owner, she hadn’t slept much, as her brain was feverishly trying to strategically rearrange the life of her business to make sure her team was protected, could continue to provide for their families from their Pro Image livelihood, and that what she built over the last two decades could survive this. She didn’t have capacity for much else by the time she made it home that night. But I didn’t have capacity for much patience or grace, because every ounce of it I had left had been spent trying to reassure our children things were fine, and the lives they just lost wouldn’t be gone forever. 

Inevitably, our lack of capacity that night lead to a heated conversation, and going to bed angry. Something we work really hard to not do. But the next day, when some of the feelings had settled, we took a few minutes to sit in the uncomfortable, and be honest about how we were feeling. She shared how scared she was for her team, her company, and how to provide for us, and I shared how for the first time in a long time, I felt invisible. That because all her capacity was being spent on her team and her clients, she had none left to see us, her family. That I was looking at really long and hard days ahead with three young children, two of which needed skills and structure that I didn’t know if I was capable of, that they were used to getting for 6 hours a day, that I was pretty sure I was going to fail miserably at. If the one person I chose to be my partner couldn’t find space to see me, I was worried I wouldn’t matter. She shared that she had a team of 10+ who could become invisible if she didn’t have space to think about them, and that if the team failed, she couldn’t provide for our family either.

We sat in that uncomfortable for a good 45 minutes. There were tears from both of us, but once we were completely honest, we were able to talk through a plan that got us both to what we needed. One that could be flexible and could pivot as needed. We understood that with only so much capacity at this time, and with both the business and our family having needs that had us at capacity level, we would need to own our roles but make sure to leave room for whatever else might come up by relying on open communication with each other on what we could handle, and when we needed help. 

That plan has been working pretty well for the last four or five weeks. But this week, after two really long sleepless nights with autism, I failed at holding up my end of the deal yesterday. The boys schedules are totally off, so emotions are high, bodies can’t stay calm, hands are not staying to themselves, and they are super quick and short to react. My reactions weren’t as patient or kind as they needed to be yesterday either. My wife had to call me out twice on the way I responded to Jack.

When she had had enough, she finally looked at me and said “what do you need?” I responded defensively, because I knew my actions weren’t attractive- but I was TIRED. She stayed patient, and asked me again- “what do you need?” After a minute, I cried. I was so tired. At 4am that morning, while Luca and Jack were up, I had been working on quotes we didn’t finish the night before for her work, so that we could keep up with making sure the team’s schedule was full. I had been patient and played with the boys at 5am, even though I just wanted to nap on the couch. And when Luca threw all of his toys at me, including a heavy-duty microwave, I was so tired I didn’t pay attention to my surroundings when I chased after him before he could throw something at Jack- I ran into the baby gate, scoring a solid bruise that still hurts. I cried because even though I napped for an hour while Alli took her morning nap, it wasn’t enough. I cried because I knew I wasn’t holding up my end of the bargain. I wasn’t proud of my behavior either, and was ashamed my wife had to call me out.

She looked at me and said, “this isn’t you, or the parent you want to be, so you need to tell me what you need, or snap out of it.” 

I could have fought back. I could have been nasty, but weeks before I promised to be honest, so I simply said “I am tired”.

She goes, “Ok, to to bed. I will put Jack to sleep by myself” as it was after 8pm and both Luca and Alex were already asleep.

I don’t ever not put the kids to bed. Jack usually needs to hold my hand to fall asleep, and ridiculously, it’s my 2 minutes with him at the end of the day that feels worth all his emotional roller coasters that come before it.

But I had just told my wife what I needed, and I needed to listen to myself, and let her show up while she was willing to.

So I went to bed.

And the kids slept through. Jack got up at 4:30 am, but he was willing to play in his fort (our master closet - don’t judge- it gives me an extra 45 minutes later to snooze which I NEVER get so I am letting it work as long as it can). 

I slept from 8:30pm, woke up at 1:30am to find everyone was sleeping so I went back to it, until 4:30am and didn’t get out of bed until 5:15am. 

I am two cappuccinos in as I sit in the playroom and type this up on my phone watching Alex and Jack play with legos at 6:30am. My wife is still asleep, and Luca is hanging under his sensory sheet, content enough he isn’t quite ready to get up yet.

I share this in case anyone else is struggling as a parent navigating the new normal, not just with their kids, but with their relationship as well.

Our parentship, aka parent-relationship, is one we put a lot of effort into. But while pregnant with the twins, we agreed to make sure she and I, outside of being just parents, always came first. If we couldn’t take care of each other, how could we possibly take care of our kids effectively. 

Sitting in the uncomfortable was a theme my therapist encouraged, that scared the crap out me. She said that if I always thought the worst was going to happen, I needed to find a way to let the facts debunk my fears. By sitting in the uncomfortable, and doing the work to be honest about how I was feeling in a situation and let others do so as well, I would learn that the worst that could happen, wasn’t really the natural outcome, slowly helping to build muscle memory in facing uncomfortable situations for what they are - momentarily decisions that need to be made, not monumental in size or life altering. 

As you face another week of this pandemic, ready to parent, teach, show up as a spouse, and get some work done to pay the bills on top of it, I just want to say- you can do this. You CAN do this. It looks to be that the country will slowly open up again, and although the newest form of normal may still not be the totally preferred one, hopefully it will continue to provide options that make things better able to meet everyone’s needs. 

If you find any of this helpful, what has worked for me is remembering to be present in our parentship, keeping open lines of communication, asking each other for what we need, and letting my partner show up when I ask her to. Nothing about the last couple of months has been normal and we have all had to adjust in some way. If you can sit in the uncomfortable long enough to find what’s comfortable, maybe the solution can be something you never knew you needed, but gets you to be better than you knew possible before.

XO

Oh and PS: if anyone has any tactics on getting a certain 4 year-old to have a calm body and a quiet voice- I am all ears! My sanity is at stake. Thanks in advance.

If my son was in your care...

Before COVID-19, a good friend who is a social worker asked me what advice I had for her as she worked with children on the spectrum in hospitals. At the time, I had some thoughts, but never got them to paper.

As I sat today, during one of the tougher days with the twins, I found myself grasping for perspective, and my thoughts landed back to that conversation, but how it relates to our current state. What advice would I have for anyone that needed to care for either of our boys, but particularly Luca who hasn’t found all of his words to express what he needs, should he be put in a situation where I could not be present as his advocate, caretaker, and comfort. 

Although the emergency rooms are not filled with toddlers his age, we just learned of the death of one while we watched the news last night, which means it could happen. That in mind, if this is of any help to someone who’s responsibility is to care for a child like Luca, here’s the only advice I can think of that could be helpful. 

If you find yourself needing to care for a boy like ours, in a situation where we could not be present, he would be in fight or flight mode... and he hasn’t let me cut his nails this week, so if it’s fight mode, he will draw blood and leave a mark... like the one he dug out on my chest today. Please be gentle if you need to protect yourself. He is little, and even though he is fiercely strong, he is our baby, and he’s just scared.

If he runs from you, you will not catch him, as he is fast on an average day, but could outrun a championship linebacker when he’s scared... and his little body can fit in places where you won’t be able to find him, taking away your time and energy to search for him when you are needed somewhere else. Small spaces will make him feel safe, and he is far too good at hide-and-seek, so please don’t let him run. 

When you finally catch him, he will laugh at you when he is scared or sad, worst if he is mad... but he will break your heart when he finally cries, because the anguish in his big hazel eyes will pierce through your heart. He loves compression, so if he lets you, please hold him tight… give him a moment when he thinks you are us, and when you feel his body release, please hold on for another minute longer, so he knows he’s not alone.

When he finally starts to trust you, I hope you have an iPad, and YouTube installed on it. Make sure it’s charged because he will use every ounce of juice it has to calm down by focusing on finding his videos. 

And please, for all the love there is in this world, have some kind of box or bag of figurines or cars that he can inspect, line up, and use to take his mind off being so scared. Even five or six pieces to give him enough of a grouping to require order and sorting will be enough. Get creative if you need to. 

Lastly, by no means am I trying to tell you how to do your job, as I know that what we are asking as a society during this pandemic is already too much, so I hope you don’t take any offense in the extreme measures I’m asking you take with my son, or children like him. My job is to make sure he doesn’t end up there in the first place, so we will continue to stay home, wash our hands religiously throughout the day, sanitize everything, and pray that our children do not end up in your care. 

But if for some reason my son, or a child like him, does end up in your care, please don’t worry about anything I just asked of you… because there isn’t anything that will stop a parent of a special needs child for being there when their kids need them… not even COVID-19, so I won’t be going anywhere… you just keep on with the good work you are doing doing your job, and I’ll keep on doing mine. 

In the mean time, I’ll keep remembering that this too is temporary, and all the sleepless nights that he is having without school, or a dependable routine of *OT, speech, and one-on-one attention from an aide, and scheduled dependable expectations with learning and social interaction… this too will all be a memory eventually. If you’re strong enough to leave your families every day to protect, care for, and save families like mine, the least I can do is work to keep my family out of your care. 

*This post originally mentioned ABA therapy, as the twins attend a school that incorporate some principals of ABA therapy. As we are two years into the diagnosis, all I know of ABA therapy is that our school has deemed it as the least restrictive environment of it, and any time I’ve mentioned it in the past, that’s what I’m referring to. I’m grateful to those who have clarified what it entails, with far more experience than I. I am merely trying to share our story. Thank you for being here.

How Parents Are Made

How Parents Are Made

“Children with special needs aren’t sent to special parents, they make parents special.”

When that powerful quote found its way onto my social media feed, I caught my breath. In the similar way to how Shonda Rhimes resonates every Thursday night in her opening and closing lines of each Grey’s Anatomy episode, it challenged me.

Since the twins’ diagnosis, I’ve settled on the mentality that we were given this family, because Steph and I could be to them what someone else couldn’t. I’ve cringed at my poor parenting, and picked up pieces of my broken heart during the really hard moments of COVID-19, and all the chaos it’s ensued on their diagnosis that catch me when I’m too tired or too frustrated to be the best version of myself. The last few days, in particular, in dealing with the loss of my Nana, has left me emotionally spent, with very little energy available for anything else.

I have questioned a million times over the saying “you are only given what you can handle”, and used it to comfort the exhaustion away, with some naive hope that we were special and chosen for our kids because we had the patience, kindness and life experience that would make us exactly what they needed; exactly what our magical children deserved as they navigated life with the autism diagnosis.

And then the coin flipped.

What if we weren’t here for them, but they were sent for us? What if they were gifted to us to make us better people, make us more patient, more kind, and provide the life experience in raising them that we will ultimately need for something bigger in this life? 

This last week has been tough in our journey with autism, particularly in managing the constant behavioral outbursts. Not only are they boys, but add the twin factor, and the little sense of remorse Luca feels (currently), with every weight of remorse that Jack feels (hopefully only currently as well) and it’s been a non-stop fist fight for days. I will say, Luca has a serious potential career in baseball- as he can nail his brother in the face, every time, with his water bottle, from as far as 10 feet away. But last night, he decided to give his sister a try, while she was just sitting there watching TV, and the bruise is still fresh on her cheek.

When we try to talk to him about it, he scripts an “I’m sorry” and goes back to his business, without any explanation of why the behavior happened, or indication on how to redirect it (or even intercept it) in the future. I keep going back to remembering that all behavior is communication, but I can’t figure out the lesson in this. And just when I was finding comfort in the expansion of his vocabulary through the great work happening at his school, life got paused for the world, and I now worry that my lack of teaching experience will cause a regression in our sweet boy’s progress. I worry that my own inability to muster the energy he needs, that he used to get from a one-on-one presence in his aid, for an entire school day, where he was tended to, challenged, inspired, loved and entertained by, will make him angrier as each day goes by.

As I watch our daughter during quarantine, who takes her naps without fuss, plays joyfully with Jack in between them, eats anything (and everything) out of the pantry and fridge, and is more than content to cuddle up to a movie on the couch, I let that concept of children gifted to their parents sink in. If we ever needed to believe that we were decent parents and had any chance of being what our twins need for the next however many decades we are blessed with them, Alex gives us that reassurance hourly.

Because, if I’m being honest, on the really hard days especially lately during quarantine in COVID-19, a parent to a special needs child could be asking themselves, “what did I do to deserve this?” I know I have. Especially at 1am, when Luca is having another sleepless night with autism, and in his frustration he’s kicked me so hard in the face I know I’ll have a decent shiner the next morning. Despite whatever pity party my small violins start to play, they are always followed by the sad question of: “what did this beautiful, sweet boy do to deserve feeling like his only resort to communication is to fist fight or hurt someone until they understood what he was feeling?” 

I hope, dear reader, that as you read that statement you felt the humanity behind it. Because although those moments are few and far between, they are real, and they are something that I know I’m not alone in feeling. If I am to share our journey with you, I need you to see all of it. And maybe, by my sharing, it can help someone else to understand from my perspective they didn’t already have. 

For every moment our life gets so hard that I don’t know what I’m doing, that I question if I can keep going, or that I start to question why I was chosen for this, I have 1,000 more moments of joy, and completely rewarding love, and a reminder that I am worthy. Parenting, and every moment of it, is a gift. Parenting during COVID-19, however, is an even greater gift. Because during these unprecedented times we have to parent at a whole other level. Even though I know it’s a gift, and completely worth it, I’d be lying through my teeth if I didn’t admit to wanting to quit on the daily lately.

Many parents are being asked to work full-time jobs from their homes while ensuring their children don’t fall behind in school. Parents like ourselves, who have littles with special needs, are being asked to find greater patience, greater understanding, and quite frankly, a greater sense of fun to keep each day and every day healthy, safe, and open to learning for their littles.

I didn’t sign up for this. Despite being on every possible wait list for ABA services in the home, I hadn’t found time to apply for social security for the boys, which I was told would be the only way I’d ever get to the front of the list to get help, because I knew the incredible team that was working for them at school was killing it, so social security fell low on the priority list. I had no way to know that we’d be quarantined with returning to school a dream far off in the long distance future. We’re not even sure if they’ll get to go to summer school, or what will happen this fall if we get another wave of this. Even as I type this, the weight of my anxiety sits in my chest and it’s suffocating, knowing that in my email inbox is a letter from the school asking that I wave the state requirement for our kids to get the services they need- because during a state of emergency they cannot provide them at this time.

Staying solution-oriented, the only perspective I need to have is to just keep going. My family is healthy. We have an incredible nanny who is helping every day, which is leading to proactively stopping Luca’s aggression at least 50% more than I can on my own, resulting in 50% less chances of injuries that put our family needing to go to the ER. The kids are loved and cared for and safe. 

If I adjust my understanding from that we’re not given more than we can handle, to the idea that every test of the last few weeks, and last four years since we became parents, are lessons and opportunities to learn how to be a better parent, inevitably being able to handle more adversity, change and growth, then maybe COVID-19 won’t seem like a nightmare of a running a marathon I didn’t train for. Maybe adapting the student perspective, believing that every behavior is communication, turning on those listening ears I keep begging Jack to make sure are working on his head - maybe then this will start to feel more like the training piece… the starting from scratch, learning how to use my muscles to work for me, listening to what they need as they train for the many miles ahead… sharing stories with strangers to help pass the time, making life-long friends from the similar terrain we run together… maybe then, this will just be an introduction to the beautiful adventure ahead - the one where the finish line isn’t why you started running in the first place.

Every child is magical in their own way, unique and different and bound to be incredible humans one day. But those on the autism spectrum, as they dance outside the circle a neurotypical child typically operates within, showcases focused areas of attention where their magic can truly shine. Where there may be areas of learning that do not come naturally to them, it leaves room for the areas they truly care about, and due to that extra space of interest and excitement, can teach you things you may never have known before.

For my fellow marathon runners on this new terrain of parenting, remember to keep eyes ahead, breath through the tough moments where your body tells you want to quit, and rely on that muscle memory built from love, sweat and tears… If you need someone to run a few miles with, I’m here… with stories to distract you, and working listening ears at your disposal, for as long as the pavement lies ahead. You’ve got this. Xo

The Weight of Anxiety

I read something today while scrolling social media, that mocked those having anxiety about COVID-19, saying they were giving weight to something weightless… 

It stuck with me in a way where I just can’t let it go. I know I normally discuss our journey with autism here, but I would find it hard pressed to find a parent of autism who doesn’t deal with some kind of anxiety. Since my goal with this blog is to share our story in case it helps someone, anyone else, I thought it might be time to own this one.

I’ve dealt with anxiety for what feels like my entire life. It’s appeared in all different shapes and sizes, and I’m not really sure how best to describe it, so bear with me as I try.

What is anxiety?

It’s a feeling of worry, nervousness, or unease, typically about an imminent event or something with an uncertain outcome.

What does it feel like?

For me, I feel my entire body get tight. I get incredibly tense, from my legs, to my arms and chest, and can even feel it in my head. Because my chest tightens, it can be hard to breath, and as my forehead feels the stress, it can easily cause a headache and be hard to think straight.

What causes it?

For me, the common causes of my anxiety lie in when I feel out of control, feel as if I’m being or could be judged, and when I’m letting someone down, in some way, or worst - myself. When it happens, I find myself to become truly dramatic, where the situation feels like the end of the world, despite that I can be a very practical and realistic person.

How do I act during it?

I get defensive about anything and everything. I immediately feel like everything is my fault, and that there is no way I can be enough. I get irrationally upset, or unreasonably sad. I turn into someone that is unrecognizable to the people who know me, as I’m simply the worst version of myself. And then, when it passes, I’m back to normal. What’s hard is that in the moment, it’s like I can’t manage it, because it completely takes over me. Afterwards, I sit in the reality and shame of it, knowing it’s not a place I want to live in. 

How do I manage it?

I’ve learned both healthy and unhealthy ways to manage and cope with my anxiety. Some of the unhealthy ways tend to represent numbing of sorts. When I was younger I’d go out and drink or party with friends, occasionally smoke cigarettes. Lately, since I grew up, got married, and had babies, half a glass of wine can make me pass out before 8pm, so now, I eat my feelings. I’m a sucker for all things cake-like, but particularly whoopie-pies and those darn frozen nutella sandwiches. (Not healthy- and not helping the constant fear I’ll be judged for the mom bod I try to hide in compression yoga pants- but I’m just trying to get by here ya’ll.)

Healthier alternatives that work for me? Six months ago, when I felt like my anxiety was at its peak, I searched for a local therapist - who I love - and have been seeing her regularly ever since because it’s giving me the tools I need to deal with, deter, and diminish the anxiety. When I was younger, right out of college, I realized how much running truly helped my anxiety. Pumping those natural endorphins through my body let me run out my stress. These days, I can’t even find time to do a 30 minute work-out. But the days I can do it, I notice a sincere difference in how I feel. 

Because I can’t always find time to work out right now the way I’d like, and a personal goal this year was to find both physical and mental wellness, I started seeing an amazing therapist 6 months ago and it’s really helping me. If you can’t find time to get out of the house, particularly during social distancing, many therapists are participating in televisits where you can connect either by virtual video experience, or even over the phone. I cannot recommend this enough.

The Weight of Anxiety 

The weight of my anxiety comes from feeling the responsibility to take care of a messy playroom, or laundry that’s exploded over my bedroom, or a refrigerator of food laughing at me because it knows the twins won’t eat anything in it. The heaviness of it lives in late nights working on operation management for my wife’s company, after long days of childcare and working full time at my other job, aware that I could be getting up just hours after finally going to bed, with a twin who can’t sleep, when all I want to do is rest before getting up to do it all over again. The weight becomes unbearable when Luca has an aggressive episode because he still doesn’t have the words to communicate what’s wrong, hurting his siblings and/or us until he gets his point across, because it leaves me worrying about the day he is bigger than us, and if we can’t get him the tools he needs to deal with his feelings, I’m not sure we’ll know how to manage it. My anxiety particularly feels unmanageable during this uncertain time for our country when all leadership can ask is for our understanding and patience as they navigate the pandemic with uncertainty. 

The current state of what’s happening in today’s world is not weightless, especially for those who suffer from anxiety like I do. Although anxiety is invisible in nature, the weight of it shows on those who don’t wear it well. You can see it in the slump of their shoulders, or the pause in their pace; the worry in their forehead wrinkles, or the grip in the way they hold their hands in place. The behavioral baseline of those running from, or fully confronting anxiety can be different, but one thing is commonly found despite the stage of understanding/awareness/acceptance someone is in with it: lack of control of the unknown can feel paralyzing. 

My plan over the next few days, weeks, and months if needed, is to establish a routine for our family that allows us to operate in an expected manner which I can control. This doesn’t mean things won’t go awry - they do on an hourly basis in life, let alone when you are on a journey with autism. My hope is when they do decide to derail to the unplanned, that I can take each situation as it comes, and hope to put the caveat of “unprecedented times” where we are just “trying to survive” until we return to the recognizable every day, and find moments in that understanding to breath through whatever’s happening. 

Because I know what anxiety feels like in my body, when I am present in the moment, I can recognize it when it’s happening, and work to stop it before the weight of it becomes too much to bear. What does yours feel like? What does the weight of your anxiety feel like? Maybe the more we share, the less those who haven’t met anxiety, or someone working through it, will stop assuming we’re worrying for no reason. 

Ways You Can Support Someone with Anxiety

Typically spending time together is a really awesome way to help someone in need of a break, but with social distancing that’s not quite as easy. Here are some ideas that could still help: 

• Dance It Out (Virtually): Find your friend’s jam, Facetime and dance it out. Like I said, moving your body naturally produces endorphins and there’s science behind how this can help battle anxiety. If dancing isn’t your flavor (come on Grey’s Anatomy fans!) maybe yoga, or meditation together could work for you.

• Check-in: Text, email, call, Facetime, etc- Anything to let someone know they aren’t alone can help while social distancing.

• LISTEN: When you check-in, or if that person reaches out, the most important aspect is to listen. They aren’t asking you to fix it, but just to sit with them in it until they can breath again.

• Provide Laughter: Send a funny GIF, tell a silly knock-knock joke, share the thing that happened that day that is so ridiculous you couldn’t have written it for a comedy script, that makes someone laugh. Laughter helps you to breath. Put your funny pants on and make some magic happen. (Adding one of my favorite home videos below for your amusement purposes… please don’t judge our parenting. It was 5am and we were desperate.)

If you are like me, and feeling even the slightest bit anxious, remember this: we can’t control what we can’t control… but we can control what we can. Focus on the can. Find wins and reassurance in the everyday moments that you made possible to keep you grounded. And breathe. It’s so important to breathe. I’ll be right here breathing with you. We can do this, because this too shall pass. Xo

Dear Nancy Tillman

Dear Nancy Tillman,

My hope is you get hundreds, if not thousands, of letters like this, from grateful parents like myself. Parents who read their children your eloquent rhymes each night, turning the pages of your stunning illustrations, watching their imaginations run wildly into sweet dreams.

Parents, who like myself this evening, find themselves convinced that like the magic P.L. Travers created in Mary Poppins, know you didn’t just craft those stories for their children. Because even though your stories teach such valuable lessons to our children, as I read the words out loud each night, inflecting as I expect you hoped a parent would, emphasizing each important phrase, I hear you whispering in my ear to listen to what I’m saying.

As I work my way through “The Night You Were Born”, watching my son’s eyes anticipate when I will turn the page to when the bears will “dance until dawn”, smiling with such satisfaction in the merriment of the animals, I rest on the memory of how our hearts danced until dawn the night he was born, erasing the moments he took a stamp and “painted the walls” only hours earlier that evening.

When I take on your next book, “Wherever You Are”, and tell the story of how “I wanted you more than you will ever know, so I sent love to follow wherever you go”, I lock eyes with my wife each time, acknowledging in that moment, the three years of IUIs and IVF it took to start our family, savoring in everything we’ve created together, erasing any of the disagreement we had with each other that day by the time I’ve reached the page where you wrote, “my promise to you, is you’re never alone”.

If the twins are still awake after two of your books, the third to be read is usually “I’d Know You Anywhere, My Love”. As a parent to special needs, the message of “so if you decide to be different one day, no worries… I’d know you anyway”, provides such comforting reassurance each time. We have no idea who our children will be, but we stand by the promise to each of them that you close out with, of “whatever it is you imagine to be, I’ll just be so proud you belong to me.” In that moment each time, you hold me accountable to remember what my child can and can’t do, and the role I play in their lives as their advocate, their support, and their coach, their teacher, their cheerleader, and friend.

Tonight, as their eyes got heavier, I made it through only the first few pages of “You’re Here for a Reason”, where you remind readers that “you’re here for a reason, you certainly are, the world would be different without you by far,” tackling only a few more pages before they finally fell asleep. I lingered on the page for a moment, but then continued to read: “Life can be tricky, there isn’t a doubt, you’ll skin your knees trying to figure it out.” A tear trickled down my cheek. As I listened to the words I’ve practically memorized by now, it reminds me that even on the hardest days where I think I have no idea what I’m doing as a parent, that “to somebody else, you’ll always be strong.”

So, thank you, Nancy Tillman. Thank you for the amazing books that teach such important lessons to both children and parents.

*Oh, and thank you for including so many gorgeous illustrations, especially with the birds… they are my son’s favorite. - XO, Christina Young

Sleepless Nights With Autism...

I’ve been meaning to write this post since the first time I shared what a #sleeplessnightwithautism actually looked like in our household on Instagram… Prior to that public share, family and friends hadn’t really seen the picture of what one of our very typical nights without sleep looked like. As I had explained it to folks, sharing that when Luca would wake up in the middle of the night, there was no other option than to give him the iPad and wait it out, the very common response I would get was that the screen was keeping him awake and I should just let him lie in his bed until he fell back asleep. When I would share about Jack’s sleep walking, that it could be upwards of four or five times a night, and worst when it began with a night terror, the common response would be to not let him sleep walk, and to lock him in his room until he grew out of it.

Let me clarify a few things, right off the bat. We sleep trained our twins, just like we slept trained their neurotypical little sister. Alex has slept through the night since she was 2 months old. It just wasn’t our luck with the boys.

The twins were small at birth, Luca was borderline premature, but they didn’t want to separate them, so neither were in the NICU. They remained peanuts, which I do believe effects children’s ability to sleep through the night, because full bellies definitely make it easier.

During the first few months trying to breastfeed twins, I would get as little as 30min naps in between each session. One twin would take about 30 minutes to feed, then I’d have to put him back into his rock’n’play, and rock him with my foot as I fed the other twin for another 30 minutes. After I would get them both back to sleep, I’d have to pump for 45 minutes, and as the twins fed on a 3 hour cycle, it would give me 30-45 minutes if I was LUCKY when all was said and done, to nap before I started all over again.

Now, yes, Steph would and could help. But after the first couple of weeks, when she was back at work, it was nearly impossible for her to. She was on high ladders painting all day, doing physical labor, and making strategic decisions - all things that you cannot do on the lack of sleep (trust me, I know), so I took on the brunt of it, only tagging her in when I needed her.

It did get easier once I stopped breast feeding, and switched to bottles, removing the need to pump, and giving me longer sections of an hour and a half to two hours in between sessions. We had tried sleep training at 4 months, but they were so adamant with not wanting to do it, that I simply couldn’t handle standing outside the door while they cried. I chalked it up to that they weren’t ready. We tried again at 6 months, and same thing. Finally, at 10 months, our amazing nanny at the time said, '‘I can’t watch you do this any more. You are a zombie, and you deserve to sleep.” The twins didn’t need to be getting up to eat any longer, and could at that point make it through. She wrote out instructions, explaining that I was to put each twin in their crib, say I love you, shut the door, go pour a glass of wine, and then text her to hold myself accountable. It was torture. Jack stood up crying for 57 minutes straight before he caved. Luca just laid there and played until he fell asleep, but Jack fought it tooth and nail. The second night, Jack only fought it for 42 minutes, and the third night was under 30 minutes. Finally, on night four, he fell asleep by the 15 minute mark. It had worked. I was about to get sleep again.

The twins were great sleepers in their cribs for an entire year. If they woke up in the middle of the night, they would eventually put themselves back to sleep. But as I was pregnant with Alex, and we were trying to think about making that transition to a family of five, we thought the boys would be ready for big boy beds. Jack had been climbing out at this point, onto his night stand, giving us a heart attack each time, and we knew we needed a crib for Alex, so we bit the bullet. Steph got them a gorgeous set of matching twin beds, and we made a big deal about it as the summer started. We had two months to get them used to them before she came.

But that summer was when the diagnosis was official, and many of the characteristics that come with autism were starting to become more recognizable - including what we now call “sleepless nights with autism”.

Those two months before Alex came were excruciatingly hard. Steph and I would each take one twin, reading them stories, and then laying with them in bed with the lights off, sound makers on, etc. We had tried to make sure we ran them around every night to make them tired before bed, we removed screen time, we worked to fill their bellies and have a really strong bed time routine. But nothing worked. We couldn’t lock them in and let them figure it out, because it became WWE and was always moments away from an ER bill. Even when we laid with them, both Steph and I would get punched, kicked, scratched, jumped on - you name it. I can remember going to work, and worrying someone was going to be concerned about the bruises and scratches make-up just couldn’t cover up. When they asked me at my physical if I felt safe in my home, I explained I was more than safe with my wife, it was my 3 year old twins that gave me pause.

This went on even after Alex was born, except the night time routine got harder. I’d have to feed Alex while Steph tackled the twins solo, and then as soon as she was fed, I’d switch so she could have some time with her before putting her to bed, and I could take the “tough shift” with the twins. There were nights I didn’t make it back to my wife in our bed until after 11pm. We weren’t getting any time together, and truthfully, we were pretty miserable. Even after I’d get them to bed, Jack would inevitably have a bad dream or wake up and sleep walk needing me to put him back to bed after only a few hours sleep. Fortunately it was usually right before or right after I’d feel Alex, but still…. it was starting to become unbearable. We even thought about splitting the twins up, giving one of them Alex’s room, and then dealing with it when she was old enough to realize she didn’t need to be sleeping in our bedroom any more. We figured we could strip the rooms of everything that they could hurt themselves with (joked about padding the walls), and then try the “cry it out” on big kids method everyone kept telling us was our issue. This didn’t solve the issue.

But then something magical happened. The boys turned THREE years-old. You know what they could take when they turned 3? MELATONIN. Our PC told us to give them each one pill, play in the playroom for about 20-30 minutes to get any extra energy out, and then head upstairs for bath-time routine. By the time we got them into the bath, they looked like zombies, so we hustled to get through shampoo, soap and toothbrushes, and by the time pajamas were on, covers were pulled up to chins, eyes were shut and our jaws were on the floor. LEGIT on the floor. In a matter for 45 minutes, our twins were passed out.

Now let me insert a few key things to think about with Melatonin. It’s all natural. SO many people need it. It’s non-habit forming, and ya’ll - when I go to buy it at the pharmacy, they are ALWAYS out of stock. So for all ya’ll trying to pretend you aren’t giving it to your kids- stop playing. You aren’t helping any one. Let’s be REAL about the situation. ESPECIALLY for children on the spectrum. Melatonin is one of the more commonly used sleep tools out there, and one that for us, was a life-saver.

That first night, after we put Alex to bed shortly after, I was able to sit at the dining room table with my wife for an hour, eat dinner, and have a conversation. We hadn’t talked like that in months. This started to become our new routine with this incredible new freedom, and I swear, saved our marriage from possible demise because there was no way anyone could have survived the way we were operating.

Jack’s sleepwalking continued, and around when Jack turned 3.5, he started having night terrors. We think it has something to do with his greater awareness and understanding, because he began to become more anxious. He’d wake up screaming around 9:30pm, and it could last anywhere from 1-5 minutes. This never really woke Luca, because he was “used to it” we thought, but we learned after he got his tubes in, that in fact, he just couldn’t hear him. Once those tubes were in, it became problematic. As you’ve seen if you follow me on Instagram at @twinningwithautism, is that when Luca is up, he is up. It can take him 3-4 hours to be able to get back to rest.

I started to research night terrors, and learned of something called “The Lully”. Unfortunately, they’re on their way out of business, or I’d share it here, because it completely cured Jack of his night terrors, but the science behind it is interrupting the circadian rhythm as they fall deeper and deeper into sleep. The melatonin worked so well on Jack, that it almost sent him into that deep sleep too quickly. Approximately 20-25 minutes after Jack would fall asleep, The Lully, which was a mechanical device plugged into the wall that sat under his mattress would vibrate until it felt a movement reaction. It wanted to wake him ever so slightly so that he moved on his own, interrupting the fall into deep sleep. Within two weeks we saw 70% less night terrors, and by a month in, they had basically disappeared. I will say, that on the days we forget to do it, or don’t get the timing right, he will have a night terror, at which point I just prepare for a tough night- but we’re keeping up with it for the time being.

Our sleepless nights with autism have been more frequently during age 4, because the twins are growing so quickly. Each time they go through a growth spurt, we see more sleepwalking from Jack, and more frequent episodes of night time hangouts from Luca. When Luca gets up in the middle of the night, he will wrestle himself in bed until he’s figured out he just can’t go back to sleep. We’ve tried to give him more melatonin, we’ve tried to not give him an iPad - but he wakes the whole house up, we’ve even tried putting him in the car and driving him around until he would fall asleep. CRUCIAL problem with that last one, is usually it’s me driving him around, and not necessarily safe to do on my lack of sleep. So I’ve learned what works best for he and I is to go to the guest room downstairs, get him a snack to fill his belly, give him his iPad on low light and low volume, and even put a movie on in tandem, riding it out until his body can rest again. Sound miserable? It is, haha, but it’s all we can do right now. It’s not his fault. His brain is going a mile a minute when it happens. Typically it’s when he’s getting sick, going through a growth spurt, learned something incredibly interesting/inspiring the day before and just needs to learn more about it on his iPad, or when something traumatic has happened the day before and it’s upset him to where he can’t sleep - OR, his brother woke him up with sleep walking and now he can’t sleep again. The joys of sharing a room.

Lessons for those going through this, or something similar?

1. All kids are different, and so are their sleep cycles. If you have a kid who sleeps through the night- kudos! Don’t rub it in, and don’t judge another parent who isn’t getting sleep. If they ask for your advice, cool, but otherwise, keep it to yourself, smile, and find the best empathy you can muster.

2. If your child is having night terrors, and research it further if you aren’t sure, consider the method the Lully provides. Message me and I can connect you with more research, but it made a world of difference for Jack!

3. If your child is of age, and on the spectrum (or not and just having a hard time with falling to sleep) talk to your pediatrician about melatonin. It was a GAME CHANGER for us. And for those of you using it and pretending your not- you aren’t helping anyone. In this case - open your mouth, share the truth, smile, and muster the greatest amount of empathy you can.

The good things that come with this lack of sleep?

1. Last year, I wrote a book, about surviving the first year after diagnosis. It took an entire year, but every morning when I was up for a few hours at a time, I wrote a chapter (or two) and accomplished a personal dream. (Not published yet, was told I needed to establish an audience - so thank you for being here and helping me inch closer to this dream becoming a reality.)

2. I’ve seen more sunrises in the last year than I had in my lifetime combined, and each time I see one, it reminds me of when my wife proposed at sunrise, one cold September morning, on Race Point Beach in Provincetown, MA. It was a magical moment, one that I don’t remember the details of, but that the same muscle memory of watching that sunrise brings me back to, warming my heart to the 100th degree.

3. I’ve shown up, for my family, time and time again, for what they need, when they need it. It sounds silly, but it’s something that matters to me. I’ve made sure my wife doesn’t feel what sleep deprivation feels like unless necessary. I’ve made sure to not shame my kids when something out of their control is keeping them from the rest they need.

4. Lastly, I’ve learned that if I can do this, if I can function in all capacities of my life, undergoing what is used as a significant form of torture in some countries, then I can do anything I set my mind to. That every action I take is a choice - and mine alone. Despite how FLIPPING TIRED I AM, that feels pretty amazing.

My view this morning, March 1, 2020 - no filter…

Not quite sure who will read this, as it’ll get posted at 6:30am on a Sunday morning- not a great time to attract readership, and for most who don’t know what it’s like to have a child up in the middle of the night, I would assume this sounds like whining. I promise you, that is not my intent. My goal in all of this is to spread awareness around autism through the eyes of our journey, and THIS… THIS is DEFINITELY part of our journey.

Let’s just hope that they either grow out of it - I’ve heard at age 5 it settles down but who knows if that will be our case - or I get really amazing at operating without sleep. :) PRAYING for the first one.

Enjoy your Sunday ya’ll! And hey… leave a little love if you could. I could use it today. If you don’t want to share this post on social media, I completely get it. But if you’re enjoying the blog, and think someone you know might enjoy it too, I’d truly appreciate a share of the main site: www.twinningwithautism.com. Thanks in advance! And sweet dreams… xo

Today, I'm tired. But not too tired, to love unconditionally.

Today, I am tired.

Today I am more tired than usual.

I made the mistake of having one too many glasses of wine earlier this week at an important work dinner with my wife, and I am still feeling the weight of it three days later.

That night we went out, we had our old nanny over to watch them sleep while we went out to dinner. We stuck to our routine because without it, they would be lost. No one would sleep. The disruption could set them off for a full week. That’s a full week of patience, and understanding, and grace that I don’t know I could muster this week as we worked to reset them.

But this was a big night for my wife. The kind of night she waits a decade of hard work, hard physical labor, and long late evenings of extra work after those long days of physical labor, to get to. This was the biggest kind of work night she has had since we have met. So for that, you interrupt routine, at all costs.

We made a late dinner reservation, asking two of her employees to meet us for a later evening than they most likely wished to do on a Monday night. We went through the normal bedtime routine with the kids but pushed in 25 minutes earlier than we usually do. Our old nanny was helping, and although they adore her, it’s different. It’s a blip of difference which can be just enough to cause concern, or throw them off. But they did great, and we got them to bed, and headed out to dinner.

We got home after a really fantastic night, and made it to sleep around 3 hours later than I normally catch shut eye. I could have guessed Jack would sleep walk that night. I almost kicked myself for not staying up just a little longer so I could catch him and put him back to bed.

I was asleep for 20 minutes when I heard the loud thud if his feet as he walked to our room. My body knew to kick into action despite my exhaustion, and I worked quickly to get him back to bed with as little disturbance as possible.

He did this 2 more times that night.

Jack suffers from sleep apnea, and has since he was two years-old, just after we learned about the diagnosis and everything that comes with it. We tried everything to help him sleep through the night, and even had him lined up for a sleep study with a neurologist - but thinking about how taking my three year old autistic son who is scared of even thinking about going to the doctor, to stay in a hotel room, hooked up to all sorts of wires and deal with being observed all night - made me anxious beyond belief. So, when Jack sleepwalks, he walks past our windy staircase, and into our room to my side of the bed. His eyes are shut, and he is merely moving while asleep.

I can say from experience that he doesn’t remember any of it, because I slept walk for a very long time as a kid. For me, it usually happened when I was stressed or anxious. It breaks my heart to think that my little boy is so stressed or anxious that he’s sleep walking on a nightly basis. But the most important part of being there for someone who is sleep walking is to not disturb them, so I think I’ve trained myself to sleep while on alert for over two years now, which means my body never really rests.

What’s difficult about when Jack sleep walks so many times in one night, is that it becomes a pattern he has trouble undoing. It’s almost as if it gets worst unless you provide routine to remind him it’s ok. With Jack, it’s like his “lines” are emotional lines… emotional repetition of pictures that make him feel safe and secure, in the comparable way to that Luca or your typical autistic child has to line up their toys to sooth themselves. Hard to explain, yet completely the only way that makes sense in my head.

The next morning I medicated with too many cappuccinos. Pushed through the day until we made it to bed time, and the kids got to reset again. We made sure to keep bedtime routine calm, and positive, and very nonchalant, not over stressing that we were paying attention to trying to get the routine right.

But Jack slept walk 2 more times that night. Which meant my body reacted to alert wake-up interruptions two more times… simply because we broke routine earlier in the week.

And then last night, after another intentionally routinely evening, we finally began to reset Jack, and he only slept walk once.

So today, after a long running stretch of no sleep this week, as I near the end of the work week and look towards Friday, a video came across my social media feed that was exactly what I needed to hear. A fellow autistic parent acknowledge a time that was nearly impossible to push through, and the grace she found in the nearly impossible.

When I’m tired, this kind of tired, I start to wonder if it will always be like this. I should not be complaining, as the weeks when Luca is off in the middle of the night, he will wake up and be in capable of going back to sleep for a minimum of three hours, typically causing me to be up from 1am - 4am, if not later, before I can reset him for a nap before school, so there have definitely been harder weeks of exhaustion that I’ve survived. But when I’m tired, I’m not at my best. And there are days, where I’m worst than not just at my best. There are days that I question if this will always be my life. If my body will actually ever be able to rest again. If my wife and I will ever be able to just leave our children with a sitter, whether it be family member or hired help, and relax for a few hours, not worrying about what kind of repercussions interrupting the kids routine will create.

But then I think about what Jenn Jordan said in this video that brought me to tears.

She said that a time that she felt at her worst, she turned into an invitation.. an invitation to love unconditionally- meaning WITHOUT CONDITION. As a parent, how can I hold it against my child that he’s so anxious that he sleeps unsettled each night, despite that it means today I’m tired, and so tired that I’m not at my best? Oh, how grateful I am, to have gotten this invitation today, when I needed it most.

It’s a really fantastic talk. If you have a moment, feel free to watch. She’s simply lovely.

So when we put the boys to bed tonight, we were extra patient, extra playful, and extra present. We tried harder than we normal do. We used quiet and calm voices, and didn’t rush trying to get the kids to sleep so that we could go to sleep.

Jack was the last to fall asleep, and in his typical fashion, he asked Mama (Steph) to read to him, and for Mommy (me) to cuddle him, as he likes to hold my hand while he falls asleep. After he finally let his eyes rest, and his breathing became steady, Steph and I looked at each other, tearful, smiling, while we took the moment to be present in how awesome he was, and how blessed we were for moments like that.

My advice to other parents out there, working to be the best they can for their kids, is to take every invitation you are given to give that love without condition. And like this incredible woman I’ve just discovered, Jenn Jordan, be willing to laugh when it’s hard, be real when it feels impossible, find grace in the moments it takes to push through, and then - keep doing it, over and over again.

When your kids don't feel well...

One of the hardest things I have found through this journey, is watching one of our children in pain while feeling helpless to figure out how to help.

Luca woke up last night after being asleep for about an hour - screaming in pain, and it wasn’t until after five or six very long minutes of our trying to get him to tell us what was wrong, trying to give him words like “it hurts” or “owie” to differentiate if he woke up with a nightmare or if he was in excruciating pain; showing him his “what hurts picture chart”, begging he show us what hurts, to simply work to calm him down enough that his actions began to focus on his ear, tugging and pulling and screaming as he refused to let me let him go. 

Luca was so upset but refused to take pain medication, so we did what tends to happen when the twins are in that much pain- a Tylenol suppository- which is equally awful for both the child receiving it and the parent providing it.

After about ten minutes, the medicine kicked in and his shrieks became cries, that began to subside to whimpers. We held him as long as he needed until he was ready to go back to bed, truly exhausted but still in steady pain.

Thinking our boy would finally be ready to rest, we went back to bed, only to hear his level 10 pain screams again. We took him from his room so he would not wake his brother and walked him around the kitchen, holding him close and trying to comfort him while we checked with our doctor. After being advised to try Motrin- which inconveniently does not come in a suppository, we had to hold him tight and work to get him to take the Motrin (majority of which he spit all over us). 

This is when his fight/flight mentality kicked in, and he ran for the basement door to leave the house. After trying to distract him in numerous ways, and calm him down so that he wouldn’t wake his siblings, I decided to put him in the car and drive towards the ER in case he couldn’t calm down. I grabbed warm clothes, socks and shoes, and both our jackets, and we headed out the door.

Two minutes in the car he was at peace- still holding his ear, but the movement and being strapped in tightly in his car seat, upright where the pressure would subside. 

Great, I thought, some peace for the poor kid. But then, as I was driving with instrumental pop on Spotify to sooth him, I realized that it was nearly 10:30pm at night… and I was tired. I don’t mean the kind of tired where you’re annoyed to still be up… I mean the kind of tired that was dangerous to be driving. So I text my wife and said I was going to bring him back. He was content after all, right? 

The moment we got back to the house and I brought him upstairs, hoping we could cuddle together to a movie until he passed out, he started screaming again. Loudly! I tried bringing him to my bed, where he refused to stay, clearly determined to wake the whole house up. I ended up snapping at my wife when she asked why I didn’t just bring him to the ER like we planned- because she was saying it from her position tucked in bed where she’d been sleeping while I had worried about driving off the road with our son in the back of the car. 

When Luca tried to escape again, still screaming, I realized we very well may need to be in the ER all night. So I grabbed our things again, put him back in the car, and headed to the hospital. About 15 minutes into the drive, he began to fall asleep. I thought about the ER during flu season, and how many joked the hospital I was headed to was where people went to die. I thought about the hospital bill that would come from a potentially long evening with a screaming autistic child where I could be told there was nothing they could do, while exposing Luca to something much worse. So I decided to take a left and head home instead of continuing on to the destination. I got home and it was just before midnight, but this time Luca was so exhausted he let me cuddle him in the guest room until he passed out. 

I crawled back into my bed after midnight, drifted off to sleep, and felt a jolt a few hours later when Jack crawled into bed with us at 4:30am. Oh the #sleeplessnights of parenting children with autism. You’ll hear so much in regards to the lack of sleep I’ve gotten since pregnant with the twins, which will better support the fact that the one blessing in disguise last night was that Jack actually slept through the night so that I wasn’t juggling two sleepless toddlers. There truly is always something to be grateful for if you can keep the right perspective. 

I brought Luca in to the doctor today expecting without a doubt in my mind that he would have a nasty ear infection. But after a quick examination from the best doctor I know, she declared his #eartubes were in tact and clear, there was a little drainage, but otherwise, he would persevere. The direction was to try Flonase and continue with the tylenol/motrin. Although I did not get the diagnosis that would give him a shot of antibiotics and magically cure everything for him, I did watch Luca get on the scale by himself, and then ask the nurse to check his height but standing under the measuring tape anxiously looking up at her; I listed to him say hello to the doctor, and let her listen to his heart beat without fuss; and I watched him proudly grab my hand when it was time to leave and say “see you soon.” All important moments that didn’t happen at our last visit less than 3 months ago.

And yet, I sit here as I type this, and I anxiously await the day that Luca can say to me, “Mommy, my ear really hurts”, or “yes, the medicine helped”, or even, “I’m so sad”. I know for so many parents of amazing nonverbal children, they’ve navigated the other opportunities for communicating with their children beautifully, and this is an area in which I should find patience and excitement for those days, versus the anxious frustration I feel in the moments when I cannot help my son. But I am human, and I am forever grateful to have a partner in this #parentship (parent partnership), so that I do not have to navigate it alone.